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Sunday, 17 January 2016

How very sad to be writing two obituaries in a row. Two faces smiling out from this page together, the full stops to this blog. The full stops to the work we did together. They are obituaries I always knew I would write. Both lived short, uncomfortable lives and both always knew they would.

Those of you who remember Broken of Britain, may not remember Rhydian. He was an economist, writer and political activist for Plaid Cymru http://www.theguardian.com/profile/rhydian-f-n-james
That's why I wanted to use the proof image above. Politics made Rhydian's heart race as it makes mine. I think he would have wanted me to use this picture.

In this picture, he looks capable, as he most certainly was. He looks passionate, which he was. And he looks political. Which he was. That he also looks disabled is incidental. I think he'd like that.

It was Rhydian who engaged the first politician to support sick and disabled people through the welfare reform bill 2010. He drafted the first early day motions (EDM) for Hywel Williams. I didn't know what an EDM was. He wrote clear, yet forensic pieces of journalism when the rest of us were still reeling at the headlines. He analysed the detail, picked at the flaws and fed constant ammunition to those banging drums and rallying troops online.

You might notice that none of Rhydian's articles mention that he had Friedreich's Ataxia. So perhaps I won't dwell on it here. Enough to say that following a life that made his heart race may not have been the most self-preserving choice. It is a degenerative nervous condition that slowly chips your life away. Rhydian knew that every day counted and chose to spend some of them as a warrior.

And maybe that's why Rhydian chose to campaign for others. Online, his condition was totally irrelvant. Online, his words spoke for themselves. Online, his unquestionable genius just was. There were many times over the years I found out what someone's condition was after months or years of knowing them and was utterly shocked. It taught me so much about the perceptions of disability and capability and how very wrong they usually were.

The people I met were hysterically funny, sharply cynical, searingly clever and focused on something more than the everyday. Their disabilities were irrelevant beyond the limitations they placed on their ability to produce the work they wanted to. Online, the world can be a level playing field, and I hope that gave Rhydian a sense of liberation for a while as it did me and so many others.

Tuesday, 3 February 2015

I've just found out that Lucy Glennon (@lucytweeting) has passed away.

Those of you who knew Lucy will know that she was tireless in everything she did. Even when she was very, very tired. She always somehow found that last spoon to defend a friend or fight a wrong.

She was one of the first people I got to know on social media and she would often get in touch to see if anyone was writing about a particular disability story of the day or if we were "live-tweeting" a parliament debate.

I've met just a handful of people campaigning who simply march on, resolutely, no matter what obstacles are put in their way. "Over there, in the distance" is a condition so painful or cruel, they simply force themselves to look away. It is always there, yet never there. It controls everything they want to do, yet controls nothing they need to do.

That for me was Lucy. She couldn't bear injustice and fought it however tired she was that day. If it was no-one else's "job" it would be hers to speak for those she worried were voiceless.

I suppose because of her remarkable resolve, I thought of her condition, Recessive
Dystrophic Epidermolysis Bullosa as something "over there" as well. We made each other laugh on dark days, shared recipes on Twitter and discussed our dysfunctional bodies online in the hope it might inform others. But I didn't think of her as sick or vulnerable. I thought of her as a lion in a cute hat.

You can read more about Lucy's life here : http://benefitscroungingscum.blogspot.co.uk

Friday, 9 January 2015

"I've
agonised about how to write this post, but as with everything, honest and from
the heart is always best.

Those
of you who love and trust me I hope, will be pleased.

Those
who doubt my intentions and goals and those with different goals to mine will
almost certainly be critical, and, in a sense, I understand that response. If I
didn't know me I might be sceptical too.

I've
devoted the last 6 years of my life to doing anything and everything I could to
improve WCAs (Work Capability Assessments for ESA, Employment and Support
Allowance)

I've
negotiated with people I did and didn't want to, I've worked with any group or
individual with a genuine concern for those experiencing the assessments. I've
worked with media and politicians of all parties. My only concern has ever been
for the people - like myself and some of you - going through the process
of assessment.

My
own work assessment for sickness benefits (you can read about it here : http://diaryofabenefitscrounger.blogspot.co.uk/2010/10/how-sick-is-sick-enough.html was a ludicrous and unpleasant process from start to
finish. The initial letter was threatening and scary, and the centre was
totally inaccessible in the middle of a red no-stop route. The waiting room
carpet was stained and smelled of urine. When I did get asked to go through,
after a lengthy and nervous wait, it was into a small empty room, with a
camera, grills on the windows and just a table with two chairs facing one
another in an interrogational confrontation.

Though
my application was successful, the letter to confirm my "success" -
being written off to a lifetime of £108 per week - was almost unintelligible
even to my admittedly illness addled, but nonetheless, degree-educated
brain.

I
didn't hear a thing from anyone throughout the process, which in total took me
about 8 weeks - I was lucky, average waits have been 26 weeks. Half a
year. The letter didn't even tell me how long the award was for.

None
of this is acceptable, none of it will ever tell us much about the capability
of the person being assessed. With a toxic reputation amongst those who must
claim it, those who administer it and those who report on it, none of the many
Harrington/Litchfield recommendations appear to have led to the kind of change
necessary for a fair and valid test.

It
is not inherently a good thing for Support Group numbers to be high. If some of
those people who qualify would actually rather like to work, but are terrified
of an intimidating and farcical system of support that actually leads to a life
of fear of change. Being terrified of an assessment letter or experiencing
actual anxiety and distress every time a brown envelope from the DWP falls
through the door is never going to lead people to engage. I know, I wouldn't
have dreamt of it. I was terrified of the brown envelopes myself and I hoped a
sensible system could be in place before I ever had to go near another ESA
assessment. However, it's a brave company that attempts to make reasonable
adjustments for my kind of impairment and any that does will face many new
challenges.

We
are coming up to an election period. There will be a hiatus and a time to
breathe and take stock. There is a new provider, MAXIMUS and the new contract
to provide WCAs as well as a wider range of disability benefit assessments.It is considerably more costly than the
old Atos contract. Simply put, there will be more money, and they always say
"follow the money". I'm not overly concerned with the stuff for
myself, but it can be the difference between success and failure in the
"real world".

If
there was ever a time to get significant and valuable changes to what now seems
universally accepted to be a system that is in serious need of better delivery,
it is now. And delivery does matter. It does matter that people are treated
with respect, it does matter that people with already often difficult and
challenging regimes are not put through any more stress or anxiety than they
need to be.

Is
it enough to achieve procedural change? Many think not and both Harrington and
Litchfield have asked that change comes more quickly and thoroughly. Many are
abolitionists - - the latest Work and Pensions Committee report recommends
fundamental root and branch reform of the whole process and Litchfield seems to
believe that further change will inevitably come too.

But
it does matter that there are accessible formats in order that everyone can more
readily and easily understand the various requirements for support – including
documents, forms and letters. It does matter that the assessments feel
collaborative, rather than intimidating and that people get a chance to engage
properly in the process. It matters that people who want to work, who can work
and need support to do so, are assessed in a way that such support can
materialise, whatever the impairment. But that signposting and joined up
approach simply doesn't exist at present. The two are still entirely separate.

And
so to the point. From today, I will be responsible for making sure that as many
of those improvements are made during this period of change and pause as possible.
MAXIMUS have asked me to be their Head of Customer Experience, and it seems,
have given me fairly free reign to devise a strategy to bring about a wide
range of improvements to the service from a customer perspective.

The
job covers all aspects of customer experience and the easiest thing I can do is copy the job description below. I hope anyone I've already lost
to explosions of horror might at least take a look at it and imagine me doing
the job. It is not insignificant in scope.

Of
course there are considerable benefits to both myself and MAXIMUS in this
development. I will be giving the same 300% passion and commitment to them that
I have been giving to campaigning. I won't be writing about them, I'll be
working with them.

Crucially,
it's a campaigner's job to change
things, not just to make a lot of noise. That noise is supposed to lead
society, stakeholders and commentators to the point where real change can be
achieved.

In
the last 6 years, I never felt that was the case, but at this moment in time,
finding myself in this exceptionally unexpected situation, I simply believe
that I can do more good now, here, by doing this, than I can do with all of my
other interests.

Whilst
I have to make an enormous - almost cosmic - mindset shift to take this
direction, MAXIMUS also have to bring me into their trust and with very
little to go on, accept that I will attempt to do the job as skilfully and imaginatively
as I can. My past opinions have hardly been filtered. Everyone knows that I'm
obsessive about changing this, Giving me a job to keep me quiet would be
to not know me at all.

I've
had just 3 weeks to think about all of this and come to terms with it. I've
already done my worrying and wondering and weighing up. I've already had to
decide to change absolutely every last thing about my life and take this step.
My husband will give up work - he's already resigned to support me and care for
us all, amazing man. I will be working full time, I will lose almost every bit
of support I currently get from the social system, I will face criticism, I
might hurt people who are disappointed. These are all huge considerations.

But
I have to try to finish what I started. MAXIMUS have the contract. Things are
being re-thought now. The election period is coming now. The job was available
now.

Someone
is going to do it. I can do it, with all of my knowledge and personal
experience of what is wrong with the system at the moment and a rich research
background to draw on from the Spartacus Network reports and all of the other
amazing research done by DPOs, charities, individuals, groups and academics
over the last few years.

If
everything continues as before, if change is achingly slow and the reputation
of ESA remains as toxic as it ever was, then by me taking on this job, it won't
be because no-one cared. It won't be because no-one knew what needed to be
done. I believe that I know what to do and there's no doubt that I care.
Harrington and Litchfield have recommended what to do, the Work and Pensions
Committee have recommended what to do. My own Spartacus Network and many others
have recommended what to do.

Now
it just needs to be done. Positive change will take time, but I believe I can
help effect that change.Whatever
becomes of ESA and WCAs and whatever party wins power and however public
opinion waxes and wanes, whatever assessment may or may not exist now and in
the future, it has to be as good as it can be.

Whoever
administers the contract - and now it will be MAXIMUS - if they can make it
caring, dignified and clear to understand, whilst making it very clear that
decisions are ultimately not taken by them, but by the DWP, then there is no
reason for this to be a toxic contract. Clearly, I hope it won't be. I hope I
can make a difference, and I'm confident that if I can't, then no-one could
have.

My
life will change completely, as will the lives of my family. Yet again, they
will throw every last card up into the air and support me to do what I need to
do. And I do need to at least try to do it. I need to see if WCAs can become
something people don't dread or disdain. But the thing that won't change is my
commitment to trying to get it right. That will never change whoever I work for
and whatever I do."

Job Description

JOB DESCRIPTION

Job Title: Head of Customer Experience

Reporting to: Service Management and Improvement
Director

Purpose of the role

Reporting to the Service
Management and Improvement Director, the Head of Customer Experience will
continuously appraise the various aspects of our service to deliver and focus
improvements from the perspective of the customer going through the experience.

Key Accountabilities

Define and communicate the new
Customer Experience vision by fully engaging with internal colleagues as well
external parties including the Customer Reference Group, and other interested
stakeholders.

Outline “the journey” to achieve
the customer experience vision including key landmarks and measures of success.

Undertake research and analysis
activities to build a first-hand understanding of the current customer
experience as seen through the claimants’ eyes, across all touch points. Establish an improvement cycle by formalising
regular inputs from stakeholders, claimant complaints received, quality assurance
findings, and other sources.

In collaboration with the
leadership team, managers, IT and other relevant departments identify potential
service improvements that would enhance the experience of customers. This will
require the Head of Customer Experience to work collaboratively with all
business leads and stakeholders and contribute to the development of business
cases for improvements.

Play an ambassadorial role in
developing a stronger “customer experience” mind-set and culture within the
business, ensuring that all employees are absolutely consistent in their
understanding of what their contribution is to the customer experience.

Report on the activities
conducted, summary of findings and recommendations made on a monthly basis.

Continue to develop practices
and build a collaborative network of internal and external stakeholders with
the goal of establishing a strong reputation for customer focus and
improvement.

CANDIDATE PROFILE

Essential Experience

Able to demonstrate experience in a leadership
role with an established relevant network in the sector and a reputation for
delivering exceptional “customer experience.”

Sunday, 14 December 2014

I know I'm an inverse snob. I doubt the ability of aristocrats to run the country for the common good. Actually, that's not true. I doubt the ability of Tories to run the country for the common good. I doubt their will to and their motives too.

I think in my heart that Osborne and Cameron are privileged and arrogant and incapable of empathising with about 99.8% of their own public.

If it placates my critics at all, I know that I do this, I know that it's unreasonable and I know that it will never quite be kicked from my council estate and heavily chipped shoulder.

I also know that a long line of Labour politicians have come up through very similar backgrounds and I didn't doubt their ability to understand my life. Three of the most aristocratic of all were my very favourites.

So I'm a hypocrite.

But come on! They do absolutely nothing to confound my prejudices.

It's like they actually attempt to be as aristocratic as they possibly can.

Our Prime Minister has averaged 5 holidays a year. Whilst not even attempting to look like running the country taxes him even a little bit. (Pun intended) David-Cameron.jpg

It's just all so very depressing. I feel like I've inadvertently wandered into an Edwardian Novel. The poor laws are alive and kicking utterly trumped by about 7 of IDS favourite cruelties. We're blaming immigrants just like they do in Tressell's Ragged Trousered Philanthropist 100 years ago.

Can't we just do the 60s again instead and pretend this was just all one awful LSD trip?

Thursday, 27 November 2014

I don't know much about tech - several of my friends will splutter at this understatement.

I also don't know much about social media, despite popular opinion.

But I do know about trending hashtags. I've used them to my advantage many, many times and have had many top trending tags, including one global one.

I've noticed the anti-leftie rapid response unit are claiming that #CameronMustGo has only trended for 5 days solidly because a small, dedicated group of lefties have been tweeting it non-stop, even creating multiple accounts to do so.

THIS ISN'T POSSIBLE.

It's true that a tag can initially trend with relatively few accounts, but the only way it can continue to trend is if new accounts tweet consistently. Volume does NOT create a trend, only unique users.

You might want to share this to counter the propaganda.

And if you doubt what I say is true, do you honestly think if hashtags could be faked so easily Amazon and Apple wouldn't be top trending every day? Or similarly, that the Labour Party wouldn't ensure that such a convenient tag was right up there too?

Tuesday, 25 November 2014

Those of you who saw my article about an invitation to speak at a Unum event may know that the responses in the comment thread were fairly inconclusive. About 50% of the responses said engagement was key and to go, the others said they were just using me and there was a danger my credibility would be compromised.

In the end I decided those worried for me might underestimate my Machiavellian streak and that as long as I read from a carefully written speech and posted it here afterwards, it would probably do more good than harm.

So for those who are interested, a copy of the speech I gave is below. I think on balance it was valuable. There was a good mix of 3rd sector and corporate representatives though I can't share who as the meeting was held under Chatham House rules. Nonetheless I insisted on sharing my speech with you all and the Unum representatives readily agreed.

I hope you think that what I said was valuable.

"It's was a very, very, difficult decision for me to come here today. Not physically, but ethically. Rightly or wrongly, the sick and disabled people and their organisations I usually speak to, believe that the corporate world is a cruel and callous one. One concerned only with profit and tax receipts. Can we really blame them after the many mistakes of the last decade or so? There are few companies that know this better than Unum.

But we can't stay in that place of mutual mistrust and justifiable fear forever. At some point, both worlds have to be prepared to listen to each other and find a better way forward. People will only suffer until we do.

That’s why, after much deliberation, I decided to accept the invitation to come here and speak today. 2 hours ago I was in a hospital bed, hooked up to an IV feed pumping calories directly to my heart. I didn’t look like this either. I've spent 8 weeks of the previous 12 in hospital, I've had major surgery to remove yet another 50cms of my bowel. I have less bowel than I need to sustain myself with food alone and I've had over 36 blockages causing obstruction and terrible symptoms.

However, in those 3 months, I’ve written 28 articles, given 4 media interviews, taken part in one radio show, advised a TV channel on an inequality programme they are making, spoken at 2 events and attended one gala dinner. I have had 3 meetings with politicians and supported countless disability campaigns through social media. All from a hospital bed.

If anything proves that we can enable people with long term illnesses to achieve fulfilling work lives, it's this. There are ways of enabling those who choose (emphasis) to continue to work to do so, no matter how limiting their conditions. I am entirely my own boss, I can choose when I can manage to work and when I can't. I can pace myself, and set my own deadlines. If I can do it, then so can an employer. I know, because I have enabled hundreds of sick and disabled people to do exactly the same. If I can urge you all to do just one thing after today, please read the comments below an article on my blog, (the Diary of a Benefit Scrounger) entitled “I am Spartacus and I….." I believe it will transform the way you see this issue.

But we are the first generation who must deal with it. Just 50 years ago, people like me would have died. But as the briefing to this event pointed out, we can now ensure that people live with serious illnesses indefinitely and up to 50% of 50 year olds will have at least one serious long term condition. However, we can’t yet always do it comfortably.

Employers must learn to address these problems much more creatively than we do at the moment. Work must be totally flexible - often flexitime, part-time or annualised hours are not enough. We must enable home working much more commonly. Those who need to work in “Slivers of time" must retain the protections and rights of employees on permanent contracts. Finally, employers must learn that retaining expertise and experience can be compatible with large chunks of sickness absence or considerable reasonable adjustments. It just doesn’t make any financial sense to lose the best employees, simply because they can no longer commit to everything they did previously.

For politicians, they must ensure that there are no penalties and only incentives to work. Universal Credit would NOT have done this adequately, despite the rhetoric. They must make schemes such as Access to Work available more freely, though sadly we have seen an erosion of A2W rather than an increase. They must allow quick, easy returns to social security support if work fails and they should consider some kind of portable lifelong fund for permanent or degenerative conditions that could iron out some of the roller coaster of sporadic ability.

(Emphasis, key point) MOST IMPORTANTLY, AND I CAN’T STRESS THIS ENOUGH, THEY MUST TOTALLY CHANGE THEIR OPINIONS AND START TO UNDERSTAND THAT PEOPLE WILL IN FACT GENERALLY STAY IN WORK LONGER THAN THEY SHOULD, RETURN TO WORK SOONER THAN THEY SHOULD AND ARE THE BEST JUDGES OF THEIR OWN IMPAIRMENTS. UNTIL THIS IS THE CASE, UNTIL WE STOP TAKING SNEERINGLY OF “ILLNESS BEHAVIOUR” AND MALINGERING NOTHING ELSE WILL MAKE ANY DIFFERENCE AT ALL.
I've learnt that the gulf between academic or political analysis of the employment market and long term illness, and lived experience are very different worlds. As a campaigner and someone living with a serious long term illness myself, I have a virtually unique perspective, as I’ve also attempted to produce academic analysis. I know myself that good intentions sometimes evaporate when crowbarred into words on a page. Conventions can dilute passion until it’s all but lost. Perhaps most of all, lengthy chapters of heart and soul can be misrepresented in a media world concerned only with soundbites.

How does it REALLY feel to be in constant pain? We might think we know, but we don’t. I have effectively had Salmonella for 31 years. But human nature doesn’t allow us to believe that could be possible. Sometimes I struggle to believe it myself. Yet I’ve lost count of the times close friends or family have told me of a recent food poisoning in sheer horror. They will say “I thought I was going to die, I was clammy and shivering, I passed out on the bathroom floor. I must have been to the toilet 15 times and I was sick until my throat bled.” And they simply can’t bring themselves to believe that I feel like that every single day. Even people who have seen me exactly as they describe countless times can’t believe that it’s really that bad all of the time. We’re programmed to forget severe pain - If we weren’t no-one would ever have a second baby!!
But the fact is that no amount of evidence or statistics or research - or even good intentions - can enable someone who has lived a pain free, healthy life to truly understand those who have not.

The single most important thing we could do is let go of our paternalistic and sometimes judgemental attitudes to ill health and embrace the vast experience and creativity of those trying to be the best they can. If an employee has decades of a previously unblemished sickness absence record, it is extremely unlikely that they became a hypochondriac overnight. If they insist they need an adjustment you believe is unnecessary, it’s vital to stop and ask ourselves if we can really understand the need.

The ONLY (emphasis) way to design and implement schemes or policies that will work for people with long term illnesses is to co-produce them, ensuring that the people who really know what is needed have an influential say in development."

Comments were invited and discussed after the speeches and I pointed out that fatigue is the most cited factor preventing people with long term illnesses from taking or continuing with work. I said that pain can sometimes be treated, symptoms sometimes controlled, but there is just no defence against the often paralysing fatigue that is present in so many long term conditions. Simply having a comfortable space or two that staff can use to rest or even sleep in for a while could help many to increase their capabilities. It would also help with the "brain-fog" that so often accompanies fatigue, allowing someone to return fresher and more productive later in the day.

Friday, 21 November 2014

Children have no guile whatsoever when they first come across disability. Perhaps a "person with wheels", or a lovely doggy with the "person with funny eyes". They might stare in curiosity at "that man's funny face" or ask an embarrassed parent "Why has that child got no hair?"

And the key point I wanted to make in this article is glaring out in that last example. Embarrassed parent.

Children are totally innocent. They haven't learned to judge, it will be years before they know what discrimination or prejudice are. For those first few precious years, they are simply curious. It's their job, it's how they learn.

So little Tarquin or Kylie stare at me on the days I use a wheelchair or supermarket scooter with no shame at all. Shame is something adults create and in turn, inflict.

And so we teach our children not to speak to anyone "different". We teach them that it's rude to even look at people with disabilities. We teach them not to learn about them by asking the questions that stem from their natural, childlike, curiosity.

Is it any wonder we grow into adults uncomfortable around any kind of "difference"?

This lovely list of children's books from Scope make great gifts for young children, encouraging their innocence and natural acceptance. I'm sure you'll be buying Xmas presents in the next few weeks and I'm sure many of them will be for young children, so do consider getting them one as a stocking filler?

Wikio

Gadget

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About Me

I have a rare form of Crohn's Disease. I was diagnosed 21 years ago and have had many operations to remove strictures (narrowings in my bowel that grow like tumours) I suffer daily pain, often vomiting, malnourished and weak. I take mega-strong medications every day including chemo-style immuno-suppressants, opiates and anti-sickness injections. Sometimes I am fed into my central vein by tube, other times I can enjoy a nice meal out. I have children that I often can't look after and a husband who often looks after me.
Our lives are disrupted daily by the misery of a chronic condition.